Charlie's story

Charlie lives in Chesterfield with his mum, Anna, brother, George, and sister, Evie. Charlie has Complex Hereditary Spastic Paraplegia, which means he has difficulty walking and has dementia. Charlie enjoys playing his guitar, going to college, and visiting Bluebell Wood. Mum, Anna, shares their story.

“From when he was two years old, I knew Charlie was different. He was developmentally challenged and didn’t want to hang out with other kids, and he got bullied a lot.

“In 2016 we went on a family holiday and he couldn’t walk properly in his flip flops. Over the next six months he developed a turned out foot, and by the end of the year he had started slurring his speech. My sister was a consultant at a hospital in Scotland and when she heard Charlie speak she knew something wasn’t right. One day she took him to the cinema and on the way home his legs just gave up and she had to carry him home. We were all really worried, especially Charlie – he kept asking me if he was going to die, but all I could say was ‘I don’t know’.

“Finally, in 2017 we found out that he has Hereditary Spastic Paraplegia. At first I thought ‘that’s not so bad’ but then I looked up the symptoms and I realised Charlie had the complex form. He can walk on flat ground but not on uneven ground, and he gets tired easily. Because the condition is neurological, Charlie also has dementia, which is heart breaking. Sometimes he’ll talk to you and he thinks he’s making complete sense, but he’s actually just mumbling. He can get up six or seven times a night and needs almost 24-hour support. I even have to have a baby monitor in his room so I can hear him if he wakes up or falls.

“Charlie’s diagnosis has affected our whole family. Because Charlie’s condition is hereditary, George is worried he’s going to get it too, and Evie never likes to leave my side. For me, Charlie’s condition has meant losing a lot of what made me, me. I’d just finished a three year degree in social work when he was diagnosed, but instead of getting a job I’ve become a full time carer for Charlie.

“Our community nurse suggested Bluebell Wood to us, but the thought of a hospice scared me. I was introduced to a counsellor there and at first I thought it wasn’t for me, but I now see a counsellor every week, which really helps. Charlie started coming to the hospice in June and he loves it. I was worried he would worry about how sick he was when he saw the other children, but he really enjoys going. He loves the bath, playing on the Xbox with the nurses, and practising his guitar at music therapy.

“Looking after Charlie can be mentally and physically exhausting but at Bluebell Wood I feel supported. Getting to know parents who understand is so important; they get that some days are just really bad. I hate using the word normal, but that’s how I feel at Bluebell Wood. I’ve been to some fantastic social events with other families which have been so much fun, and it’s great to hang out with them and just remember who I am.

“If I feel stressed I go for a walk in the Bluebell Wood garden and watch the brook. I take a deep breath and I know it’s going to be OK. We’ve faced a lot since Charlie’s diagnosis, but now I know that Bluebell Wood really is the best thing to come out of such a bad situation. They really do support the whole family. I can bring my mum or friends in and we all feel like part of the family, and Evie and George are really supported too. Without the hospice our lives would just be so different.”

Tilly has hypoxic ischemic encephalopathy, which means she didn’t get enough oxygen to her brain when she was born. Now she comes to Bluebell Wood with her mum, Rebecca, and her big brother, Gabriel, where she loves meeting new people and relaxing in the spa pool.

William is Paul and Michelle’s ‘miracle boy’. Before he was born he had a stroke and spent the first nine months of his life in hospital. Despite facing so many challenges, William has never stopped smiling, and he loves coming to Bluebell Wood.

Mia was a happy, bubbly nine-year-old who was always on the go. In August 2018 she was diagnosed with a rare condition where the body reacts aggressively to an infection, and she died eight days later. Her family spend valuable time together at Bluebell Wood after she passed away.

Four month old Lily died at Bluebell Wood in February 2017 after being born with a rare heart condition. Her mum and dad, Ella and Ryan, call the hospice their lifeline, and they still visit with their son, Oliver.

Chester and Rhianna were born at just 26 weeks old in 2009, and they spent their first year in hospital fighting for their lives. Chester has brain damage and Hirschsprung disease, which means he can’t pass poo normally, and now visits Bluebell Wood for short breaks. His mum and dad, Lisa and Ian, tell his story:

Charlotte Lee calls daughter Gracie her snow baby. Born in January 2009 following a healthy pregnancy, Gracie’s arrival was a few months after young Sheffield mum Charlotte had received the surprise but welcome news that she was expecting. However, over the next few years Gracie had some developmental issues, which led to a sad discovery.

Olivia is a bubbly, chatty teenager who loves singing, and all things Harry Potter. She lives in Sheffield with her mum and dad, Michelle and Russell, and her brothers, Harry and Finley, and loves spending time at Bluebell Wood.

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